12.29.2010

This much I know, it wasn't boring

I just looked at the calendar and noticed that on Saturday, it will be a whole new year, wow, that was fast! I have to say that all in all, I think it was a good year for us. It wasn't easy and certainly wasn't boring. It started off a little rough. I was in a terrible amount of pain from injuries I had gotten in an accident the previous March. After having a really great trial with the Eco we had to send it back and again, Claire had no voice, which she found very frustrating. Chloe was just starting to really do all of the things that Claire had once mastered and then lost which felt a lot like having my heart constantly ripped out and stomped on. However it was through that craziness that I got back to a place where I started to feel again and I can not say how wonderful that has been. I think I had been pretty close to a zombie, trapped on a hamster wheel of survival for a solid 2 maybe 3 years and this was the year that I got off. February was really the month that changed the pace. First I had surgery on my wrist which really helped once I recovered. Since I wasn't much use with one hand I got to sit and have my tattoo finished, which was such a good way to really feel, I am still surprised at just how therapeutic that process was. Then we had Erika's Dream which was a lot of fun. There is something so rejuvenating about being around our Rett family, they just give life. Then Make A Wish sent Claire and our family down to Disneyland to meet Ariel. That was a game changer, really, Make A Wish is awesome. The way that trip encouraged and inspired Claire was transformational, it gave her the confidence that she carries today. I think it was around the end of March that the Eco came, that was also a huge part of this year. I can't imagine life without her voice, even when it is annoying and she says the same thing 30 million times in a row, I love it! I would have never imagined that Claire would be teaching her sister how to say silly things, but with the Eco that has happened. Chloe has grown by leaps and bounds by the minute the whole year through. She is such a sweet and caring little girl. I have loved getting to know her spirit and seeing what is possible when all the DNA gets in the right order, it is amazing! Before Chloe I honestly didn't get why people would want to have so many kids (more than 2) but now I can say that it makes a lot more sense. No, that is in no way an announcement, we are very content with 2 little girls, if I were to guess, the next thing we add to the family would be a male service dog. Back to the story, this summer I had my first and most likely last trip to Las Vegas. I got to spend time with some of the greatest moms that grace this planet today and with no kids! Erica dubbed it the rettaway and I am hoping that something of that nature lines up again for 2011 because it was epic. I think that one of the defining things of the last year has been the deep friendships that I have made within the rett world. Even though many of them are not really close, just knowing that there are others out there has given me great peace and I love you guys so much! If there were a metaphor for this last year I would compare it to a scab. The injury wasn't super fresh, but it hurt. As it heeled and peeled off it was a different kind of fresh hurt, but I could start to use it more. After this year of having the scab picked off and regrow and eventually heal, there is still a little scar tissue, but I am functional. I am excited for 2011. If there is anything that the last year taught me it was that I don't dream big enough. So with that, I suppose that I can't even start to think about the fun and exciting things that will take place in the next year, but I know that it is out there, and I am ready for it! I am hoping that among the fun stuff for next year is a trip to Boston in May and since I am working on the whole dreaming big thing, I am going to through out that I hope they announce the cure while I am there, that would be really, really cool! Final thought, I have decided that Sigh No More by Mumford & Sons was my theme song to 2010, so here are the lyrics for you.

Serve God love me and mend
This is not the end
Lived unbruised we are friends
And I'm sorry
I'm sorry

Sigh no more, no more
One foot in sea, one on shore
My heart was never pure
And you know me
And you know me

And man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing
Oh man is a giddy thing

Love it will not betray you, dismay or enslave you,
It will set you free
Be more like the man you were made to be.
There is a design,
An alignment to cry,
Of my heart to see,
The beauty of love as it was made to be (x4)

12.26.2010

Christmas 2010

Over the last few weeks there have been a lot of posts out there about what people have been doing to celebrate the holidays, how the holidays are hard and how cute their kids are in special holiday attire. So the holiday celebrating was supposed to start Dec. 1. For the second year in a row, I forgot to get candles for the Menorah so the Festival of Lights was off to a weak start, really I think 2011 will be my year, it is later in the month, which I am sure will help. We did however manage to pull off a few successes in the weeks leading up to Christmas. We took the girls out to look at the lights in Vasona park and they really liked it. Considering that the last time we did it Claire was screaming in the entire way through, followed by vomiting , which explained the screaming, this was a huge success.

We also put up a tree and had the sense to buy a fake one that was pre lit, so it even had lights. We only got four ornaments on it, I figure I need to leave something to improve on for next year. There was also a very successful trip to the Christmas party for where Claire rides horses. She was very excited to see Santa and as it turns out, Chloe was not. On the bright side there was a firetruck for her to play in so there wasn't too much crying.
Beyond that, we really didn't do much during the advent season. With that said, it has been a huge improvement from the last three years, so I am pretty excited about it. The thing that really made this year stand out over last year was that we got to be with family. Last year was a bit depressing doing Christmas just the four of us, Jared and I were the only two who could speak. Claire was hating life without her talker as we had just returned it from the trial and Chloe was more of a danger to herself because she could get into things but didn't have the understanding of what she was doing or consequences so she was a handful. What a difference a year has made! Claire has really started to be able to better express herself with her talker and Chloe has grown by leaps and bounds. Instead of sticking her hand in the fire she can now stop and say 'no that's hot no no no' which really helps, A LOT. We drove down to San Luis Obispo and met up with my parents and my brother. We took a boat ride on an electric boat in Moro Bay, Claire has always loved going on boats. This was Chloe's first trip and she wanted to get off and tried repeatedly to jump into the water, by the end of the trip she settled on steering.
Sometime after our boat ride Claire started having some extra weird neurological activity and that sorta put a damper on the cheer level for Jared and I. We tried and to just push through and enjoy the time with family and it was nice. It was the most fun we've had opening presents (my rett friends out there know just how horrible this activity is) since Claire was 1. I am guessing that night we just didn't get enough sleep or the month of advent caught up to us. But Christmas Day wasn't the smoothest of rides, although rather eventful. During the chaos of trying to keep both girls happy at the breakfast table,
Jared put the crayons in Claire's juice, which was a lot funnier than it was frustrating, only because he immediately labeled it a Captain Awesome moment. It was pouring rain outside so we had to stay in. Chloe made friends with many people as she went up and down the stairs and up and down the stairs. Claire fell asleep by the fire as I sat and cried, mourning all of the things that rett has taken from us, struggling to be thankful that at least she is doing well and still with us, thinking of the two families that had lost girls recently. We wrapped up the holiday with a family picnic in my brother's room. The only place in town was a taco shack and so that is what we had for dinner. It felt reminiscent of A Christmas Story and a small part of me wanted to break out into Deck the Halls with the ra-ra-ra from the movie, but I was too tired. We drove home that night, a little early. As we laid the girls down and got settled back in, it is good to be home, I am thankful for a lot and I am so happy that the holidays are over! Now onto fixing Rett syndrome in 2011, who's with me????

12.18.2010

Field Trip!

Since Claire has started kindergarten, she has 35% of her day in inclusion with a mainstream kindergarten class. Last week they went to the children's discovery museum and Claire got to go along for the whole day! I knew that I had to go guarded but that I would have to go. I drove Claire, her aide and another little girl from the class. Lucky for us, there was an accident so the 40 minute trip took an extra hour and used up all of our boredom margin in the process. Once we got there is was a little rough at first. The first exhibit I saw the kids playing in was the access/ABILITY. This was the exhibit that the teacher was so excited about for her peers to see. See it they did, one girl played in a pediatric wheel chair and wheeled her self around. How horrible is it that I watched this all I could think is, that is hardly disabled, sure they can't walk, but that's it. Show me a blind person with CP, that is disabled. I don't really think mean things about people who are confined to wheelchairs. really, I have friends with that singular handicap and it by no way shape or form easy. It just seems like what we have is so hard! So hard that an exhibit would never even think about ABILITY on our level, what it takes to get Claire to participate in life. So with that I sat hiding in a corner after a short time I could hear Claire as she was clearly not happy and her aide didn't have a clue. I stayed back and really tried to let Lupe, the aide, do her thing, but she didn't so I stepped in. I have to remind myself that Claire is in an autism classroom and the aides are trained to work with that population, it is easy to forget that Claire works very differently because similar behaviors present. So Lupe was trying to calm her sensory system when I stepped in. I asked a few questions and figured out that Claire was lonely. Lupe had been playing one on one with Claire, while Claire wanted Lupe's help to play with her friends, a very different thing. Once we figured that out, Claire did a little of her heart wrenching sad crying and calmed down. I can't imagine what it would be like to be 5 and want to play with your friends and just not have the ability to get the grown ups around to help, so I really think the screaming was fully warranted. I took them to find the classroom teacher Mrs. J who would know who Claire's friends were. She pointed them in the right direction and Claire was happy as a clam. The teacher also took the time to ask me questions about placement and weather or not Claire was in the most appropriate class. I know she was well intended but it pretty much came across like, "I don't think this is good for her." Sigh. I know it is hard, but sadly, it id the best option and it took me about 15 minutes to explain this to the teacher, not sure that she ever got it. Claire went on to make a corn husk doll and play in the clay room where she again got a little upset, only because she was starving and a little snack fixed that quickly. By that time I had also showed Lupe how to use the yes/no cards, that helped a ton! We finished up with face painting, where one of Claire's friends, the little girl in the car with us, painted Claire like a tiger. Claire loved being a tiger, loved! We sat and enjoyed lunch on a park bench with her peers and left happy. I am so glad that Claire gets over things faster than I do, her perseverance continues to amaze me. In the end, we did it! We went to the museum and we left with smiles on our faces, I do think that it will be a long time before we go back though.



On a side note, I want to share this very exciting research. It pretty much says that what we are doing really works. Putting Claire in a rich environment really is critical to her brain development, so we will most likely continue to torture ourselves with fun stuff like this until we get the medicine in the trial, in which case hopefully we will be able to do the same fun stuff, it will just be less torture because her brain will fire better.

Clinical Trial For Rett Syndrome Launched

Study marks the emergence of disease-modifying treatments for autism spectrum disorders

BOSTON, Dec. 16, 2010 /PRNewswire-USNewswire/ -- Researchers at Children's Hospital Boston have begun a randomized, placebo-controlled trial to test a potential drug treatment for Rett syndrome, the leading known genetic cause of autism in girls. The drug, mecasermin, a synthetic form of insulin-like growth factor-1 (IGF-1), is already FDA-approved for children with short stature due to IGF-1 deficiency.

The trial, now enrolling patients, marks the beginning of a trend toward drug treatments seeking to modify the underlying causes of autism spectrum disorders, rather than just behavioral symptoms such as anxiety or aggression. It follows research in animal models, published in 2009(1), which suggested that raising IGF-1 levels can reverse features of Rett syndrome by enhancing maturation of synapses —the points of communication between brain cells.

"We expect that therapy that stimulates synaptic maturation will serve as a model for pharmacological treatment of not only Rett syndrome, but of other autism spectrum disorders," says Omar Khwaja, MD, PhD, the study's principal investigator and director of the Rett Syndrome Program in the Department of Neurology at Children's.

Rett syndrome, occurring almost exclusively in girls, is an X-linked neurodevelopmental disorder causing severe cognitive, motor and language problems and autistic behaviors. Other features include loss of purposeful use of the hands; repetitive, stereotyped hand movements; slowed brain and head growth; and heart-rhythm and breathing problems. Although affected children appear normal during their first six months of life, symptoms emerge, tragically, between 6 and 18 months of age, a prime period of synaptic development.

The three-year pilot study will randomize 40 girls (aged 2 to 12) with Rett syndrome to receive the drug, known as Increlex® (Tercica Inc., a Subsidiary of the IPSEN Group) for five months. The study will use a cross-over design, allowing girls assigned to placebo to switch to active treatment after a six-week "washout" period. The main outcome measures will be improvement in neurodevelopment and in cardiorespiratory function.

Although Rett syndrome used to be seen as a degenerative, irreversible disease, recent research indicates that brain cells aren't actually lost, and the brain is structurally normal – instead, the synapses between cells are weak, preventing brain circuits from maturing. Rett syndrome's usual cause is mutation or deletion of a gene called MeCP2, which itself controls a group of genes that regulate synaptic changes in response to input from the environment. In 2007, working with a mouse model of Rett syndrome, researchers used genetic tricks to restore MeCP2's function in the brain.(2) The mice showed a striking recovery, suggesting that Rett syndrome, even when well established, might be a treatable disease – if only synapses could be built back up.

"This was an enormous intellectual proof-of-principle that we aren't wasting time thinking of therapies for girls who are already symptomatic," says Khwaja. "Before, it was thought that if there ever was a treatment, it would have to be given before symptoms appeared, and that once the disease started it couldn't be reversed."

IGF-1, the drug used in the trial, is indirectly regulated by MeCP2. It has been shown to enhance synapse maturation, and in mice missing the MeCP2 gene, treatment with IGF-1 ameliorated several features of their Rett-like disease.(1)

"There's been a big sea change in how Rett syndrome and other neurodevelopmental disorders are viewed," Khwaja says. "The synapses are very dynamic. They need to be stabilized, and if they don't receive the right stimulus, they'll naturally disappear. That change in paradigm has really affected the way that we look at treatments, and I think it brings a lot more hope."

The new view has already affected the way schooling and education of children with Rett syndrome are being approached. "There's more and more evidence in animals that enrichment and schooling can help synapses form and strengthen," says Khwaja. "The battle is getting the girls into appropriate educational settings. If you are repetitive, and give them ways to communicate, they actually can learn, and that's probably because you're reinforcing these synaptic connections."

The clinical trial is funded by the International Rett Syndrome Foundation, Autism Speaks and Harvard University's Catalyst Pilot Awards for Clinical Translational Research. For information on enrollment, contact Katherine Barnes (katherine.barnes@childrens.harvard.edu; 617-355-5230) or visit www.childrenshospital.org/rett.

12.15.2010

My Little Slice of Joy this Season


It might not look like that exciting of a picture, just some dirty dishes, but to me, they are so much more! With the background that I have in pastry, I love the candy cane and gingerbread Christmas themed stuff, for several years I had the honor of assisting on gingerbread works of art at the Westin and I am forever changed. In my soul I wish I was in the Midwest snowed in a baking cookies and other such holiday traditions that are cultural like that. So a few years ago, when I saw this set of mugs and dessert plates with joy on them, I decided it was something that I had to have. They have been very safe in my cupboard, although they have been lonely. Since getting them in 2008 I had yet to use them. Tonight was the night that that changed and it was wonderful! Not only did I get to use my plates and mugs, I got to cook for friends, which is one of my favorite things to do in the whole world. Erica and Maren came over for our advent conspiracy type craft night. I really didn't do much, I was more in a management role really. I had hands available to hold a tight knot or take excess trash away. Erica was the mastermind behind it all, doesn't she look crafty!
Maren, well, she gave a good effort, you can see that she had a few challenges. I kid, Maren is the craftiest of the crafties. She just happened to have a little bag of hair clips and earrings that she had made (who makes jewelry more or less wear it???) and left the cutest pair of little purple flower earrings that I think a certain 5 year old will be pretty happy about in the morning. Anyway, back to our night. I could go on and on about how we laughed, made a mess and sent Jared to the grocery store. It is a good story and I suspect pieces of it might end up out in the blogoshpere from my partners in crime. But for me, I just liked having friends over, a lot. I have been really blessed to get to have two moms like this close enough that they can come over, even if it is a two hour drive.

12.10.2010

The Irony of Christmas

Today was one of those days, you know, those days that you feel too close to loosing the will. It wasn't anything too big, a few crazy teething poop diaper blow outs, an ant hill that ended up in Chloe's hair along with Claire's frustration with my inability to read her mind resulting in several bouts of sad/angry screaming. Then it was dinner time. Jared went to pour Chloe a cup of milk when I noticed that the milk was almost gone and we wouldn't get more until Thursday, wait Thursday, we pick up the veggies and milk on Thursday, today is Friday, nobody got the milk and veggies yesterday, it was this realization that pretty much threw me over the edge. So I did the only thing I had energy for, I locked myself in my room and went to facebook. Something so oddly numbing about that site, comforting and isolating all at once, it seemed an appropriate place for my pity party. I chatted with two of my rett mom friends (btw, so thankful for you guys, chatting helps, I do feel better). One of them said something interesting, about it being that hard time of the year. Her daughter is younger than Claire and this will be her first Christmas with the Rett syndrome diagnosis. Funny how holidays in general aren't easy. Add a kid who can't use their body and they get a lot harder. It got me thinking about the O'Rourke family, who laid their precious little Aidan to rest today. I hate that Rett syndrome takes children, I hate even more that it can happen during any period of time that is "supposed" to a time of joy and celebration. It is so hard to get excited about Santa at the mall and baking cookies when pain like this is so close to you. I know that none of that really has anything to do with Christmas and the birth of Christ, but it has become culturally accepted that that is what we do to celebrate. Tonight I am stuck on this great irony, that as we all slow down to celebrate the birth of the Christ child, a messenger of peace, that it is such a painful time for so many who have experienced loss. Ultimately, it is the peace that I have from the grace I have in Christ that gets me to keep putting one foot in front of the other on these hard days. I guess I just don't like that the way we go about celebrating so often excludes our girls because of their disability. I would love to hear what others out there is blogoshpere think, do you find it hard to celebrate, how do you do it?

12.08.2010

LPCH, where everyone's the same

Yesterday was a pretty routine day for us, with the exception of a little trip over the hill to LPCH for Claire to see the eye doctor. Jared decided to take the day off so that I would be spared from taking Chloe along to Claire's appointment. After dropping Claire off at school we started the day slowly with coffee and a walk down to pleasure point, to say that it was epic is indeed an understatement. As we walked and enjoyed the sound of the waves gently crashing we did the download on all that the day contained. I really wasn't that worried about the trip to the doctor. It was a routine appointment and the worst that would come of it would be glasses. Funny how even on a good day, with the sunshine on my face and my husband by my side to help, deep down in there was a little bit of fear. We have so many memories from LPCH. Most of them involve needles and Claire or some sort of doctor telling us how worried they were. As much as I tried to believe that today would be different, a little voice inside me quietly whispered, she still has Rett syndrome. With that I was able to soak in the beauty of our morning walk and knock off a few things on the to do list before it was time to get Claire and start on the day's journey. We didn't have much traffic and we actually got there on time, which in itself is a small miracle. After checking in it was time to do what everyone else in the busy waiting room was doing, wait. It is an interesting area due to the variety of doctors serviced by that area. The lab is there, so you can hear young kids screaming as the friendly vampires do their best to stick them with needles and suck their blood in the gentlest of ways. There were a few people in wheel chairs and lots of people with glasses as the clinics that were open today were the orthopedist and the optometrist. A sweet and healthy little boy that was standing in front of us turned to look at Claire and said with so much care in his tone, "Did you break both of your legs?" She smiled and I told them that they weren't broken and he smiled and walked away. One dad that was patiently waiting struck up a conversation with me, he was there with two of his kids. They are both in different stages of the scoliosis surgery process, his eldest child also has scoliosis but hasn't had the surgery, yet. Got me thinking, they looked like such a normal family, kids dressed in varsity gear from the local upitty Palo Alto high school, but none the less, they were sitting in the same waiting room that we were. There were also families that looked to be of far more humble means. As I said to the father that I was not in line and that he could go, his son translated for him. There were people from so many different backgrounds there, so many different medical challenges. Reminded me of how we are all the same, so vulnerable, so helpless when it comes to our children. Finally we were called back and Claire was her 85% of the time wonderful little self and did everything that the doctor required of her. When we got around to seeing THE doctor she was so excited to see Claire. She remembered us from 3 years ago (memorable in a good way I hope) and that she was so glad to see that Claire was doing so well. That is code for "we expected her regression to be much worse and for Rett to have taken a lot more" but at least she chose to put it politely. I am also very glad that Claire isn't doing worse as they all had expected. So we took our script for glasses, packed up all of our gear and piled into the Smart car. We paused under the big tree before driving home to marvel at the leaves, to put it all back into perspective, that we all have a lot, that God is bigger than us and that He loves us enough to make really great children's hospitals that everyone can afford and then we drove home.

12.04.2010

Mission Accomplished, well sort of



We did it, Claire had fun at her first birthday party with her peers. It was a little awkward to walk in as I had no idea what the birthday girl looked like or who her parents were. Claire goes off to class with Donna in the mornings so I haven't really met many of her friends yet. It was pretty crazy when we got there, kids running around like crazy, balloons all over the ceiling and Claire got overwhelmed pretty fast. Good thing I thought ahead and invited the amazing Sara to join us, she is our ABA trainer and is so good at helping Claire to calm down. We went for a walk and Claire came around pretty quickly. She is so brave, she went back into the party with a big smile on her face. We opted to watch from the window of the dance studio. It was pretty fun to watch the other kids dance, they had no idea how to break dance, but they sure tried! I always love seeing her bright smiling face after we do things like this with the rest of the world, but it always makes me sad, really really sad. I hate that the world doesn't know what to do with anyone who is different. One of the girls who is a friend to Claire asked why she wasn't feeding herself the cake with her own hands. On one hand it is sweet that she thinks that Claire should be able to do it, on the other hand it is so screwed up that she can't. I hate this game of having to walk on the edge, trying to keep one foot in the world of the typical people, where I know Claire loves to be and the other foot rooted safely in rettworld. I keep telling myself that this will get easier with time, and while I do believe that it true, I know that it won't get to the place where it will be easy. I guess I get the privilege of grieving for the rest of my life or so I hear. No time for that today though, we get to go to Jared's company Christmas party tonight. Two parties with the normal world in one day, I think I will be done for a while after this :-)


videoHere is a little clip of the kids dancing, you can't really see us sitting in the mirror, but Claire had a huge smile on her face, promise.

11.29.2010

Happy Holidays!


I honestly didn't think it would be possible, but we had a great Thanksgiving. Even better than that, we had a great Thanksgiving weekend. I knew that we were going in the right direction when Wednesday started well and before things got out of control, Jared called saying that he was on his way home. I got the pleasure of leisurely shopping all by myself for those last few things I had forgotten. One of the great things about living in hippieville is that they all grow their own organic feast so they weren't all in Costco, it was creepy how few people were out, but it was good. Since I was relaxed and had time to do whatever I wanted, I went to Whole Foods to get some cheese and olives so we could have a nice antipasti for dinner. Much to my delight, while I was there they announced that the fisherman had just caught a bunch of crab that morning and he was there selling them, already cracked and cleaned. How could I not? It was such a great end to a day, just a Wednesday, but none the less a day that we decided to celebrate. I think that part of why I have such a hard time with holidays is because it sometimes feels forced. Be thankful NOW give gifts to people NOW and the only reason why we do it on that day is because everyone else is. Of coarse it is fun to do what everyone else is doing but sometimes you just don't feel like it. With the history of Thanksgiving day being as sad as it has been, it felt so good to genuinely celebrate the day before it. It just felt good to genuinely feel, something that is really hard to do when you are as tired as I am. So with the momentum of our crab feast and two happy little girls we went into...dundundun...the holiday, and it was good. I got to cook all morning at a casual pace while Jared watched the Macy's parade (which makes my skin crawl) with the girls, it felt like a pretty normal family, weird right? We went to a friends where we deep fried a turkey, which is awesome, vasts of hot oil make everything better, Chloe played with Luke and Claire fell asleep watching football after showing off her super awesome standing skills. We went home super full and it was good. Friday stated a little slow, we didn't know what to do and somehow we ended up going shopping. You didn't think I was going to say THAT did you? Claire and I hit the Carter's store for a bunch of super comfy clothes for both of the girls, we even got matching holiday pj's (see flickr to right). Feeling the exhilaration of having completely lost my mind, we went to the BIG mall. I have a special place in my heart for The Body Shop. Jared loves me so much that he dropped me off and fed Claire lunch while I went in there all by myself! The smell of that place takes me back to my senior year, back when I could take 4 bathes a day if I wanted. I did the unthinkable, I purchased 4 things and they were all for me. I have made an early resolution starting today, I will take a bath or a long enjoyable shower at least once a day. That's right, I am going to take 20 minutes every day just for me, I am so excited! I am completely amused that it took black Friday to get me to go out and do something like this for myself, God does have a good sense of humor. The weekend was great as well, I enjoyed a bath, Claire and I went to see Tangled and we purchased our first Christmas tree in the last 10 years. We also went out after bedtime to look at the lights in the park and watched some football. I am so content and relaxed and ready to soak in the advent season as well as the festival of lights. Sitting back today reveling in it, knowing that it might be another 5 or 10 years before we get this again, so I will bask in the glow of a holiday gone well for as long as I can. To those of you in that special place in my heart, the ones with daughters younger than Claire, please have hope, there is life after Rett Syndrome, it is different, but it can be good, the potential is still there!

11.24.2010

Down and Up and All Around


I have mentioned before that Thanksgiving brings with it some hard memories and it is no secret that tomorrow is the big day. Yesterday Claire had PT at CCS. She had a great session, she worked so hard on high kneel and her standing balance, the new AFO's are helping so much!!! For a long time we have really been working on walking, so she hasn't had much time on the floor at PT. Lately, our PT has been working on crawling as a strategy to help with the walking. I had heard about how well it was going, but I hadn't been around to see it and yesterday I was. It was so hard to watch. In the beginning Sue had to prompt both her hands and her legs, at the end she was doing the legs and Sue only had to help with the hands. I took me back to when she was Chloe's age. Claire was such a fast crawler, I would struggle to catch her after the bath before we could get her pjs on. Here she is working so hard at it, while I watched it felt like somebody was reaching inside and slowly ripping my heart out. Then Abbey got there. Abbey is Claire's friend that we met in Music Together 3 years ago. Abbey has CP. I remember looking at her mom and thinking how I couldn't imagine how hard that must be for her, Claire was so much easier to handle than Abbey. In 3 years time Abbey has been making steady progress and Rett has been playing it's cruel and nasty tricks on Claire. Even though she is doing very well, it was a reminder of just how far away we still are from when she was 12 months old. Then just as if she knew I needed some encouragement (maybe she can see the tears behind my sunglasses) that night she started to really use her hands more. First she got her hands tangled in my yarn, twice, she also knocked the washcloth off the table and reached to touch her computer screen. It allowed me to go to bed with a little hope instead of just a sad heavy heart. There was no school today and I was hoping that they might sleep in, that didn't happen. So we slowly got going and went out for coffee before we had to be home for ABA at 10. Our apartment is above our garage, so I have to carry each of the girls up a flight of stairs separately. I took Claire upstairs and set her on the couch, her talker was already there as she had been yakking away during Elmo just before we left. I went back down to get Chloe as Sara our ABA therapist arrived. She walked in and found Claire, sitting on the couch rocking out to Listomania (see pic above). Claire was so proud of herself, it was great! Sara then tried to "run the session" as she typically does. She asks Claire which activities she wants to do and they do them. Today was the exception, Claire was saying no to EVERYTHING! As I was listening to this shenanigans it occurred to me what might be going on. I had told Claire that we could watch Beauty and the Beast after Sara left. I then heard Claire's voice say "car parking lot thank you highway dvd player watch". The little diva was trying to politely excuse Sara a full 90 minutes early. It was so great! As the day continued it just got better. She sat on the couch to watch the movie and would call me over by saying, "I am not so well" I would go to check on her and she would then tell me "I'm fine goodbye" I felt like a human yo yo but just loved this game! Again, I find myself so deeply humbled. That I was convinced that Thanksgiving would be forever stained for me. Then we have days like this and I can dream of the day that again, Claire puts food in her mouth. I find myself being so thankful for all that I have, as broken and messy as it might be, I am truly blessed on levels that I am not even aware of. I wish you all a moment or two that you can take during this holiday, remind yourself that I am thankful for you, my friends and family on this journey, thank you!

Thankfulness Gifts 2010

I love gifts, I really love giving gifts. I think it might be because of how I grew up, my mom was really good at picking out gifts that made you feel like she really knew you. She always managed to pick things out that I had not even thought of, but were just what I needed. I am still working on honing this skill and it is hard when time is restricted by the two little girls that require much from me. This year I opted to do thankfulness gifts for all of Claire's entourage instead of something at the holidays. I chose to do this because I don't get why I would give people a gift for a religous holiday when I have no idea if the people that I am giving to celebrate the same holiday. I also want to make it clear why we are giving the gifts, because we are thankful for them, as opposed to some sort of guilt induced commercial hype that motivated me. So this was our week and it was great! We gave jars of raspberries in a light honey syrup that we had made during the summer break. Truly, the best part about giving is seeing the receivers eyes light up and a smile come across their face. I didn't get to see everyone as Claire distributed them around during school, but I am pretty confidenet that she really enjoyed seeing those faces herself. Now with all of the gift giving done, I am free to savor Thanksgiving and the advent season, and I am really excited about it.

11.20.2010

Against Dumb.

Advent Conspiracy, a really cool concept

Thanksgiving and stuff

As I sit and write I can't believe that in a week Thanksgiving Day will already be done and over. I have so enjoyed this fall so far. Yesterday I had a lot of driving to do but it was so beautiful the time just flew. It was gray out and it made the yellows and reds on the trees pop, truly spectacular. I have enjoyed different people posting about what they are thankful for and the anticipation of the Christmas season. Got me thinking about what I would say if somebody were to ask me what I am thankful for. Honestly, my mind and my heart really took off on this one and I am going to try to sort it out here. According to Wikipedia "Thanksgiving was a holiday to express thankfulness, gratitude, and appreciation to God, family and friends for which all have been blessed of material possessions and relationships." Maybe it is just me twisting things in my head, but the premise of this is that we are choosing to give thanks because God 'did' because we 'have'. As I prepare to cook the stuffing and the pies I have really been thankful not just to God, but for Him. I am thankful for my friends and family and all of the things that I have been blessed with. But I don't want to be thankful just because I have all of that. I am choosing to be thankful because I am grateful that God loves me. As dark as it sounds, just that He loves me doesn't mean that it will always be bountiful and easy, and I don't want to feel that I am only thankful because it is so good right now. Which brings me to the rant part of this post, how on Earth did we get to the place that we celebrate being thankful by waking up at 4am to go shopping for stuff we don't need?!?!?!? It would seem to me that thankful and content would go hand in hand, but alas, I am wrong. We want more and we want to pay less for it! I am so frustrated by my country's willing participation in this marketing frenzy that ends every year in people spending money that they don't have on stuff that they don't need. That doesn't sound very thankful to me. It also strikes me as odd that we would choose to celebrate being thankful just one day a year, that is all the time that we can take for that? I am really excited that this year our little family will be celebrating The Festival of Lights (Hanukkah). It seems to me that 8 days is a much more reasonable time to celebrate God and our thankfulness. We will still celebrate Christmas and the advent season as well, I don't think we should have to choose, so we are doing both! So there it is, I am very thankful for the many blessings that I have, yet without any of it I would still be sitting here in awe, that God would love me, as broken as I am.

11.17.2010

Mainstreaming

Mainstreaming is a concept that is at the forefront of my mind right now. Claire has recently started to spend 35% of her school day in the "mainstream" environment. So far this has been both a blessing and a curse. Claire loves being around the kids, considering that the rest of her time is spent in a small class with a lot of autistic boys that scream a ton, I can understand. Yesterday it was warm here so I sent Claire in a dress. I didn't think to put shorts on because it is hard enough to do everything to get her on the potty as it is. Somehow, in transitions from circle to a chair, some of the students observed that Claire was wearing a pull up. I haven't heard the full story but there were a lot of questions and Claire got embarrassed and upset. This morning the teacher from the autism classroom who really gets Claire went to talk with the mainstream class, answer their questions and close the discussion. I know that she is made of some tough stuff and that she will be alright, hopefully not scarred for life. Just because she had a hard moment, I am not going to pull the plug and put her back full time in the autism class. Easy to say when I am talking about Claire. This morning I went to BSF (Bible Study Fellowship) as I do every Wednesday morning. I had looked into getting into BSF when we first moved here and I had a normal life and was looking for some friends. Unfortunately childcare started at age 2 so I had to wait. By the time Claire was 2 the option of sending her in for 2 hours was not an option so I didn't go. Rather my life was dominated by children's hospitals, therapy appointments, IEP's and eventually grieving. With the start of this school year it felt like a lot of the dust had settled and I was ready to try to step out of my rett bubble and be part of the world. (Huge thanks to Chloe for this, without her I don't know that I would have attempted this!) Since BSF now takes younger kids, it was a good fit. I could get a two hour break from Chloe and spend some awake time really seeking God. I hadn't really thought about it, but this really is my attempt at mainstreaming and honestly, I am not sure if I am cut out for it. Today I went out on a limb and shared a prayer request since there was a little extra time at the end before we went to go listen to the speaker (we meet in a small group then all gather). My request was for prayer for me in light of the Thanksgiving holiday, that it was that day three years ago that Claire fed herself her last meal. I really want to be real and genuine in all areas of my life and it seemed like this request was just that. I got a few responses, one woman said "That's heavy" and another just smiled and said that she would pray. Another turned to me as I tried to bolt for the door and walked with me. She really did try to help. Unfortunately she tried to encourage me and tell me that it would be alright. She went on to say that these circumstances could be protecting Claire from becoming a drug addict when she gets older or some other hard thing. Gotta say this made me so mad! Why is it that people feel the need to cheer you up and encourage constantly! As if there is some sort of social force that says that hard is bad and that everyone should walk around happy all of the time. AAAAAAAHHHHHHHH!!!!!!! I love to be happy, I am often happy. Not always and that is alright. Certain days are harder for me and I am choosing to allow myself to feel as I go through rettland and everything else in my life. I really feel like telling those over positive encouragers that they should try it to. I know that they are well meaning, just like the kids in Claire's class who ask tons of questions, but it still makes you want to run and hide. I don't think that I am going to give up on mainstreaming yet, but it is on my radar. We might be moving into the middle of nowhere and starting a rett compound, where there are lots of extra outlets, so all of the girls can sit around and chat on their talkers. There will also be horses and a garden dedicated just for crying.

11.11.2010

PRC and how it changed our life


It has been a few months since Claire got her voice and I think it is fair to say that it pretty much has changed our life. I have had contact with a few different families who are looking into a communication device for their daughter so I thought I would blog about why PRC has been as amazing as it has been. At the root of it all is one phase that Claire says around people that are new to her "This is my talker, it helps me speak." Prentke Romich (PRC) was first recommended to me by somebody that I considered to be an adversary. Claire was 3 and had just started in the county autism preschool. The process of getting there had been comprised of one ridiculous evaluation after another, so I assumed that when the person came to do the assistive tech evaluation, she too would completely miss Claire. I told the lady that we were looking into MyTobi as there was an eye gaze controlled computer that was coming out that Claire could use as a communication device. While the lady didn't completely get Claire, it turns out that she is some sort of genius with a PhD that teaches about this stuff at the college level. She gave me her card and really encouraged me to look into PRC. At the time PRC didn't have a device that used eye gaze and I knew that it was all about access. A few short weeks after that PRC announced that they were releasing the EcoPoint to go with the Eco14. I still had no idea what this meant, everyone in the rett world (which is pretty much the whole universe from our perspective) was going with Dynavox and MyTobi. The Dynavox rep brought their eyegaze system and Claire was amused, but barely. Next in line was the MyTobi rep. Claire did great for the one hour that she had to play with it. There was a Christmas tree and she popped the ornaments. She also enjoyed an activity that had animals and the sounds that they made. Third up to bat was PRC, I still had no idea what the difference was between all of these, I was learning as we went. I was absolutely blown away by Claire's response to the Eco. It was language, not games and she loved it! I have never had a doubt in my mind that Claire has had a language problem, she just couldn't talk because Rett screwed up her body. The Eco was the perfect solution to it. It does just that, it helps her talk. PRC uses this really cool language system called Unity. I have to admit it was weird at first. The icon for "want" is that of a jailbird in black and white stripes looking at a wanted posted. It was much more abstract for me than it was for Claire. The coolest part about unity is how it is organized. It really capitalizes on motor planning. So once Claire gets the motor pattern for something, it is pretty easy for her to get to. It has given her access to so many weird things that I didn't expect her to say. Like calling her sister dumb or announcing that her dad was leaving late when the phone rang during dinner. Having access to language, to whatever she wants to say and not just pages about topics that I think she would enjoy has really helped her to grow into the 5 year old that she is today. She is really normal. Sure she gets mad as hell because she hates the limitations of her body sometimes. But for the most part, the talker has helped her to deal with that and say what upsets her. I want to really encourage anyone out there who is looking into a talker with or without eyegaze to look into PRC and their products. They have had nothing short of absolutely fabulous tech support as I have had my programming challenges and a few quirks. Lastly, from a parent perspective, this is super low maintenance. If the best option for her would have been high maintenance, we would have gone with it if. But it is so nice that because it is a language system, there is really very little programming. Sure we put pictures of our family in it and she has all of her music on a songs page. But she really uses it as her talker, sometimes a keyboard if we want to type something she can do that to. It is not a game, although it has go fish, uno and a bunch of other fun stuff on there. It is her voice, her access to spoken language and it has changed our life, to say we are grateful for it seems like and understatement, but that is the best I can come up with.

11.09.2010

That Went Well

No surprise that so far, today is going better than yesterday. Yesterday there was no school, which immediately makes a day hard. Then we drove 45 minutes to see a doctor and Miss Amazing remembered the wrong time and doesn't seem to be able to read so we showed up at 10:30 for a 10am appointment, which I then rescheduled for the end of November. We then rushed back home to get to OT instead of doing any number of more fun things, to find out that the OT left a message at home, she was out sick, sigh. Not today, today is so much better so far! Today was Claire's first day in her new class. I think it is pretty safe to say that I was more nervous than she was. I know so much more about rejection and how mean people can be than she does. I remember being laughed at in 1st grade. The thought of her having to endure such pain, on top of already having to deal with a lot just makes my heart sink with weight. But this morning we had our act together. We were in the car and rolling even a few minutes early after enjoying an easy going breakfast as a family. Just to clarify, breakfast as a family consists of the girls eating oatmeal that Jared and I feed them, Jared also drinks coffee. It just didn't involve vomiting or screaming or a tantrum of any sort, which was nice. Even the walk down to the car was nice this morning. It was 40 degrees which is my idea of a perfect morning temp. Cold enough for the air to have that crisp clean feel, but not so cold that you can't breathe it in. The fog was in pockets throughout the redwoods and burned off as we got closer to town. We pulled in and there was a blue spot open for us (I was a little worried about that) which was nice. Another blue placard holder, sneered at me as I got out, clearly, it was her spot. We were early, really early. But Claire really wanted to go, so we loaded up and went to sit outside the class. She obviously hasn't learned the trick of sneaking in just as the bell rings so as to draw very little attention to oneself. She rolls up and immediately three little girls come to say hi. Not in a hi sweet little baby sort of a way, more like a hi Claire what's up sort of a way, it was great! She's the popular kid. Seriously, how did I end up with the popular little girl that wants to be covered in pink glitter, loves art, horses and dogs, how can this be?!?!?!?! But I did, and she is great. I have to say how laid back the parents in that crowd are. They look way more rested than the parents at the autism school drop off. It was really nice to be part of that parent crowd. There was a very easy going feeling about it. I am really excited for Claire to get more time with the typical, more laid back kids too. I imagine that as she hears them speak and act, that she will have the affirmation of being around people who are just like her.

11.05.2010

The Beautiful People

Today was supposed to be the first day that Claire got to go to her inclusion class for an hour to start the day. Unfortunately, her aide that was trained for it couldn't be there today so we postponed the start until Tuesday next week. Side note, this works out well because Captain Awesome and Miss Amazing completely forgot to set an alarm and woke up an hour late today. When we decided to postpone yesterday, we completely forgot to tell the new teacher, Mrs. J, oops! So this morning I get an email from her, asking where Claire was, understandable. She also added that she wanted to be notified so that she can not make extra copies for Claire on days she will miss, today it was one piece of paper. I have to admit I was a little irritated by this. I have a sort of full plate, sometimes I miss things, I am after all human. So I responded and explained what had happened and offered to stop by after school to pick up the missed activity. Claire was very excited to show me her new classroom, she is over the top excited about kindergarten! The teacher gave me the activity and explained it. I verified that really, really, Claire is planning to come to class on Tuesday. It was then that the teacher politely reminded me that Claire should arrive at 5 minutes before 8 and that she is very strict about students coming late as it is very disruptive. I have to admit, at first I was a little mad. I have to drive 15 minutes to get to school and traffic is randomly very heavy, adding an extra 10 minutes. Claire has to have her meds in the am, stretch, walk, eat and get dressed before leaving for school. It is a miracle we make it on time as often as we do, on average about once a week. I really felt like this teacher had no appreciation for all the stuff that I have to do for this little girl, just to keep her alive and sorta well. Then it dawned on me, Mrs. J is no different than I was 4 years ago, back when I had a healthy 1 year old little girl and no idea about people with disabilities. My next thought was one of those huge, mind bending thoughts, that really made my brain stretch. She is treating Claire like all of the other kids, isn't that what I want? With that, both my brain and my heart exploded. This is real inclusion. The teacher is putting the same expectations on Claire and her mom as she is the other students, what an honor. I guess I figured that I would always have to fight for Claire, that people suck and don't get it and that life would be an uphill battle. I am so deeply humbled as I stand corrected. As I have been soaking in this idea of respecting other people enough to assume that they are not being disrespectful or malicious, I was hit again. Mrs. J replied to an email that I had sent. I had written a letter to go to the new classmates and sent it for approval. Her response was that it brought her to tears and that she would send it home with the students. She also invited Claire along on a field trip that is being planned for December. The class is going to the children's discovery museum. There is a visiting exhibit called accessAbility. She wrote "The concept is that kids can get an experience of what it is like to live with a physical difference and explore the similarities and differences in the ways we each participate in the world in." All I can think to say is wow, I am truly blessed. Claire is surrounded by a lot of really beautiful people. Looks like with my whine and cheese, I'll be having a big helping of humble pie too!

11.02.2010

Ah, November at last!


Don't get me wrong, October was a lot of fun. It was just a lot! My poor little brain is still pretty sore from just how much was in October. It was mostly highs, with a few lows, it was just a lot. I am so glad that November has come, Thanksgiving has always been my favorite holiday and I find the transition at the end of fall to be remarkable. The last three Thanksgivings have been the exception. The last meal that Claire fed herself was Thanksgiving 2007. Ever since then, I have had a hard time even thinking about it. But Claire is doing so well right now, after the huge success of the birthday and our first year of trick or treating, I am thinking that we are on a role. It also helps that Chloe is coming into her own, for lack of a better way to say it. She has given good balance to our family. Chloe has also taken me to new levels of exhaustion as I struggle to balance making everything super accessible for Claire and out of reach for Chloe (certainly a battle I will forever loose). As the wind dies down and I attempt to savor the season and all of the wonderful that my life is, it is hard. I don't mean that it is hard to savor, I mean that life is hard. I am wrestling with the concept of living in a storm forever. Of coarse there are good days and bad days. But the good days aren't easy, we just smile and laugh more. So the question swirls in my head, how do I live in a storm. I have heard "Life's not about waiting for the storm to pass, it's about learning to dance in the rain." and I hate that phrase. It is cute and if it gives relief in a hard moment then great, honestly I love rain, the thought of dancing in rain makes me very happy. But storms are hard. Feeding Claire for at least 90 minutes a day is hard. Balancing everything that it takes to keep Rett Syndrome from eating her alive is hard. Trying to be something more than a caregiver is hard. I think I am getting to a good place where hard isn't bad, it is just hard. My hope is that I can take that, and enjoy the beauty of my storm. Much like the monsoons that I grew up with. There was awe inspiring lightening that would fill the sky. Water would blow so hard it would go under the doors, trees would blow over, cactus would be uprooted. It was such a demonstration of beauty and power. It was great to take in, but putting the yard back together was sure a chore. Replacing roof tiles, getting the furniture out of the pool and so on. I see the next few months as a bit of a monsoon for us. It comes around the same time every year, is fairly predictable, there is always wind and lightening and a terrible mess. That is what my life feels like on Rett Syndrome, a monsoon. However, I have learned that if it starts to hail, I will not put on my swim suit and go dance in it. Yes, when you live in Arizona weather really is that exciting, and I was young, but I learned my lesson.

10.25.2010

October 24th

For the last 4 years I have hated October 24th. 2006 I was traveling home very ill after doing the Nike 1/2 marathon for my mom, who I thought was dying (Oct. 24 is also her b-day). 2007 we had just gotten the diagnosis. 2008 we were just starting school and in iep hell and a huge legal battle 2009 Chloe had started to shove in my face just how not typical her sister was. Aside from the 1st birthday, which I was required by grandparents to, I haven't done a real cake for Claire. It has been a friend or a small dinner party, but nothing really for Claire. 2010 was our year and I am hoping that this is just the start of the birthday celebration that just gets better every year! It was more of a long birthday weekend than a "day". It started after horse therapy on Friday. Our ABA conveniently canceled so we got to go to lunch with my parents who had just flown in and my cousin who was in town for hockey. We ate at The Counter and Claire got a milk shake and french fries (can you tell we are trying to fatten her up?) this was huge considering she typically gets organic whole grain pasta with grass fed ground beef, kale, eggplant, peppers and tomatoes. Saturday morning we did our usual trip to Verve for coffee, but Claire got a special treat, a whole cup of whipped cream sprinkled with chocolate shaving. Then we were off to the mall for shopping with Nana and ear piercing! A few weeks ago Claire announced "My birthday is October 24th presents earrings" how could I not give positive reinforcement to such wonderful and clear communication! We had a lot of fun shopping, she is very good at picking out clothes. Later Saturday we chose to open presents and then watch a movie before bed. Sunday was the actual birthday. We slept in a bit, played wii bowling and went out to breakfast all bundled up for the rain. I don't know why I am so consistently shocked, but Claire does so well eating out. She had a quesadilla with peppers, onions, mushrooms and some other stuff that looked really good, and she ate it up fast! A little later we did "the cake" which was a pretty big deal. Not only did she get a real cake, we hooked up a switch to the fan so that she could blow out the candles. So we ended up singing close to 5 times, just so she could keep blowing the candles out, it was such fun! For the final birthday feet, Claire took in a tray of gluten free cupcakes dripping in purple and yellow sugar crystals, the closest thing to glitter that I could find. Her class had a huge party for her and even gave her a present of a little toy cat to hold on her lap (it is super creepy but she loves it!) and some hair clips. All in all, I think that 2010 will go down in the books as a huge success!

10.23.2010

HibOO d'Live : Mumford and Sons "Timshel"

Third time's a charm

Jared and I have always enjoyed music. Before we had kids, we enjoyed a lot of concerts. We still like to try to get out when we can. There were three concerts that we had wanted to go to within a two month period. I know it sounds crazy to go out three times in two months, but we were really going to try. First was Green Day. We had last seen them when I was 9 months pregnant with Claire, back when we had no clue that there was anything besides sunshine and roses ahead of us. Our sitter canceled at the last minute and it was the most disheartening process to try to find somebody to sit at our place while our kids slept. For one reason or another, no body was around. At the last minute, our dear friend Tim called to say he could come over, as long as they stayed asleep things would be fine and if not, he was strong enough to handle a full hour of both of them screaming while we rushed home. Sure enough they slept fine. We got to the concert just as they were starting. It was a good show, they were great performers and could really get the crowd going. It was fun, we enjoyed it and went home, tired. The next round was Jimmy Eat World, we couldn't find a sitter at all so I ended up going by myself. Which in hind sight, driving up to the city by myself with a dead cell phone to a venue that I had never been to, maybe wasn't the best idea ever. It worked out well, it turned out that our pastor was in the same box as I, small world! As always I enjoyed there show, it was actually at the exact time that the pepsi challenge closed and rett syndrome awareness month started. I have to say how great it was to hide from that all for a few hours. The music was loud and it was a lovely vacation as it always is. The third show we wanted to see was Mumford & Sons. We had only recently started listening to them and have fallen deeply in love with the album. So you can imagine how my heart sank when the sitter called to cancel the day before the show. I felt like Job as I thought, "Why do you forsake me?!?!" I knew in my heart that God had it and I couldn't see it all, but it really felt like he didn't care much about my need to get the smallest amount of a break. As it turned out, I wasn't all alone. Our friend Chris was able to spend the night at our place so that he could catch an early flight and we got to go without worrying about getting home on time, phew! Finally, third try and we left the house with plenty of time and weren't super stressed out and might even enjoy a show. I am really at a loss for what to type next. The show was amazing! I don't mean amazing in a well produced sort of a way. I mean amazing in a new way to experience emotion and feeling. It might sound crazy, alright, it most likely sounds crazy. I feel like a new person after watching that performance. There just aren't words for the blogosphere to explain what that night did to my soul, but it is good. I figured the best way to explain was to just share some clips I found on youtube. You have to remember that they don't touch the awe so seeing a guy play a guitar and belt out a song while using his feet to control a bass drum as well as a tambourine, but they will show a little sliver of what I saw that night. I am posting two videos. The one titled timeshel is for my rett family. I am forever grateful to have you along this journey. The other is one of my favorite songs with footage from a show. I enjoyed it so I thought I would post, just in case you might too. More to come on the whole feeling and emotion thing.

Mumford and Sons - Roll Away Your Stone

10.15.2010

Perspective

Three years ago today the phone rang. I saw that it was LPCH and figured it was somebody to either set up an appointment or remind me of one that we had. You can imagine my surprise when it was Dr. Suttcliffe. She was calling to let me know that the test had come back for Rett Syndrome and it was positive. WHAT?!?!?!?!!!!! You see, three days earlier I had sat in our neurologist office, it wasn't that big of a visit. She had told me that the test for Rett Syndrome was negative and that Claire seemed to be doing well, so we could come back in a year unless we needed to see her about something urgently. So what did I do, what any parent would do, call another specialist for a third opinion. We were scheduled to see genetics in a few weeks, so I called them to be a tie breaker. When they called there was all sorts of apologizing for the mistake, but it was true. She had Rett Syndrome, we could stop searching for the problem. At this point, I had no idea what Rett Syndrome was, none. I had taken the approach of not looking anything up until we had a conclusive diagnosis. So I googled it. The first thing that popped up was the International Rett Syndrome Foundation. I went to their website and looked around a little bit. I remember feeling so deeply relieved, this didn't seem that bad! I read about how they couldn't toilet independently. I thought it wouldn't be a big deal to help her unbutton her pants, maybe we could just go elastic. I had no idea that she would not have the ability to walk in there and sit down on her own, I figured it was coming. The next morning I went to Bible study and shared how overjoyed (DENIAL) I was that the search was over, we had a diagnosis. One of the ladies in our group told me that there was a story about it on the front page of the paper. I thought that surely she was confused. This is super rare, not headlines in a small town rare. I was wrong, there it was Madelyn's Dream. There was a whole gala for Rett Syndrome that week, 8 minutes from our home. We wouldn't be able to go for the dinner, so I emailed the lady organizing it so ask if we could attend without paying if we left before dinner. I think my phone rang 30 seconds later. We talked for almost an hour. Later in the week I got a call from Paige, who had a daughter Katie, as in Katie's Clinic, I wasn't alone. Through the whole thing, every day of the last three years, I have been in awe of the people that I have crossed paths with at just the right time. I have learned a lot about the "system" and how to be in it but not defined by it. Claire has taught me to slow down, to notice the smallest muscle movement when she is trying to help. It has been a very long three years and I am very tired. But I am still strong, not because I am some sort of freaky superhero who feels no pain and advocates relentlessly. It is because I have started to feel the pain, because I know that I will never be enough and that I am dependent on my creator. I know that He has put each of you in my life to help me through this storm. As much as I wish the phone never rang 3 years ago and that it was just environmental and Claire was in regular ed now, I am so deeply honored to have met each of you, my rett family that I am on this journey with. I love you all so very much.

10.14.2010

So I guess this is normal

For the last year I have really been trying to slow down and not operate in crisis mode. With everything that happened so quickly after Claire was born, my mom, moving to Arizona, moving back to CA 6 months later, starting early intervention and getting a diagnosis, I think that I felt like I really needed to slow down. Who can keep up at that pace? Then we got in a car accident had a baby and a few surgeries. Then it was summer and then school started with a new team and now we are into IEP season. I keep saying that after the next thing life should settle down. So as I go through the days, just putting one foot in front of the other over and over, I wonder how can I keep up at this pace. Then it dawned on me, as I was talking with a friend about Claire's daily care and the lack of margin, how there is more stuff to work on then there is hours in the day, it isn't going to settle down for a while, a long while. Honestly this thought feels like a big punch in the gut. I really would like to have one of those normal lives where people do things like shower and think about what they want to eat or which book they should read. But it looks like my normal is just different. More of a shower every third day if I am lucky and grab some sort of protein bar to consume as I go to therapy and crash at night normal. It isn't that bad, it just wasn't what I expected.

10.09.2010

Captain Awesome


I was going to wait and write this on our anniversary, but I just can't wait. On Nov. 6 we will be celebrating 11 years of marriage. Not 11 years of good times, 11 years of marriage. But I have to say that it feels like the celebration of us has already begun a little bit, and I am really excited about that. In particular, the last few years have been very hard, there were times that I really didn't think that we would ever celebrate 11 years. Rett Syndrome seems to have a way with ruining marriages, I would be a liar if I said it hadn't given us a run for our money. We came up with the name Captain Awesome for those moments that you really do try to do something, but for one reason or another, it just all goes sideways, like putting Claire's shoes on while she is screaming bloody murder and then she can't walk, come to find out they are on the wrong feet, when Jared does it he is Captain Awesome and when I do it I am Miss Amazing. I love our nicknames, it gives us both the freedom to just screw up because our life is too hard, it helps us to laugh at ourselves and with ourselves. Last night Jared insisted that we watch Beauty and the Beast (we just got it this week!) with no kids. That's right, he loves Disney princesses, to the core. Claire has sure left her mark there! So we sat on the couch and had a great 2005 BV Cab (sort of sentimental, we were in napa for that harvest, days before Claire was born) with pizza and watched Beauty and the Beast. Just made me smile, I am so glad to be stuck in this mess with one of the greatest men to have ever graced this planet, I wanted to shout it from the mountain top, but I am too lazy to hike, so I figured I would blog, close enough?

10.05.2010

The Pearl


I know that I have been super bad about posting lately, I promise I really am trying, it just doesn't seem to happen. I feel like a huge update is due but it is too much to take on right now, so I will just stick with this little slice of the story. Today, the highlight of my day has been Ducati. Weird right? For many years I have had a love hate relationship with that word. It is the company that Jared works for and it pays our bills, for which I am very thankful. A lot of the time I feel like all the work might not be worth it and that is when I have a more hate relationship with it, but today it is love! Let me give you a little background. Jared LOVES motorcycles. In fact, that is how I hooked him. I was the only girl in our school that pretended to like motorcycles, so he talked to me, and my evil plan worked, a plan that began in 1997. Soon after we married Jared got his first bike and has always had one since then. I have always said that I couldn't be married to him without it because he gets so cranky when he hasn't rode in a while. Enter life, he is at the top of the motorcycle world. In December we purchased the bike that he always dreamed of, 'the pearl'. Jared thinks that he is a pirate and likes The Pirate's of the Caribbean way too much! So he has a blacked out bike that he named after the ship in the movie. He really loves this bike, he takes pictures of it by the ocean he likes it so much. Through this whole little Rett shitstorm it has been his outlet, the closest thing to therapy. So you can imagine the fear inside me when I figured that we needed to sell it. The accident that I was in 18 months ago has been very expensive and we still haven't settled, so we need money. Lucky for me, Jared has been hating his job lately, so he quickly warmed up to the idea. Not only did he warm up, he sold it within days! When we got up this morning, the wire had come through, the pearl was sold. We both felt a huge sigh of relief, happy that the whole thing went so smoothly. I am so proud of Jared! He has really let go and moved on in the healthiest way I can imagine. He is looking into mountain biking and some other things that he could do to get a release, he is even getting excited about taking both girls out for bike rides so I could stay home ALL BY MYSELF!!!! I have to admit I really like that idea. As I have a huge grin on my face because I feel like I have won the battle against Ducati, Jared says he got an email (which are normally Ducati related, back to resenting). There is a dealer in Florida that has an open house every year. I guess he just woke up and thought he would do something super awesome and is doing a raffle and silent auction because of Claire, to benefit IRSF. Wow! I think that the part that has meant the most to me is the wording that was used. You can click here to see the newsletter that went out and the explanation of the event. So now the pearl is gone and Jared is feeling loved by Ducati, can a girl have her cake and eat it too?

9.18.2010

just me being angry and rambling...

Good news is that Claire is great! She is in kindergarten, using her talker and even starting hippo therapy (a PT that uses a horse)! She is such a rockstar and tolerating all the new people who don't get her yet and making the most of the ones who do, I could learn from her. As for me, not so much the rockstar. Why can't I take a lesson from Claire and just make the most of what people give me. Let me back up a few days ago, I went to my first BSF (Bible Study Fellowship) where I didn't know anyone. Not true, I knew a few people, rather a few people there knew me. I don't know why I am so stuck on this, but I am so angry at the people who were "around" during the hardest and most challenging part that Rett Syndrome and life have dealt us this far. Sure, everyone has time and wants to be friends now that I have stabilized, but guess what, no! As I was leaving another mom approached me in the parking lot, she stopped to tell me that she recognized me, um, awkward. I didn't know her. So I threw out that I have an older daughter who used to go to Playschool (the private preschool that Claire went to, the one I cried every time I drove away because I felt like everyone stared at me) and she might know me from there. Yes that was it! The lady then remembered that my daughter just went on Friday's. I smiled and said see you around, because what else does one say? I got in my car and was overcome with rage. That period when the world felt like it was closing in, when Chloe was an infant and I was still trying to get things set with the school, I really needed support. I felt like a really bad car wreck, the one that everyone slows down to stare at and forgets about in a split second. Now that we aren't in crisis I would really like to just move on and love life, I really would. But here, all this stuff from the past comes and gets shoved in my face, guess I needed another challenge. I feel like saying, if you were in Vegas on Friday the 13th, walked on the cliffs with me, or spent at least 45 minutes a week with me on the phone, then you are in, anyone else, take a number. Then I see Claire, who puts on her best face even when the people who are working with her don't get it, they haven't yet learned how amazing she is. She could just go to sleep and wake up when the next person comes around that she likes, or she could scream and make their life hell. Honestly, she does a little of each, but she doesn't completely shut the door. She has faith in them, that if she keeps telling, quietly leading them along, they will get it, and for the most part they do. I know that I was never called to hate, rather love and i don't remember anything being said about it being easy. So I guess it will just be yet another process, another lesson and hopefully I can learn it without causing too much pain. I know this post was pretty negative, honest, I feel much better now, but I feel like I would be fake if all I ever put up is Claire is awesome and life can be a little hard, thanks for bearing with me.

9.14.2010

Too Marvelous!

October is Rett Syndrome awareness month and I have a team for the strollathon, so I put together this little video to help promote my fundraising page. It certainly wasn't an easy process. Going through old pictures, remembering all of the things that Claire used to be able to do. How she would feed herself, hold her cup and push her little wagon around. It got me thinking about everything that Rett Syndrome means for me and our family. Sure, it is a pain because we have to do so much lifting and it takes forever for her to chew, meals feel like an eternity. Then I look at her, I love how she reminds that nothing has changed. Sure she can't talk or use her hands, but nothing has changed. Claire is who she is and today, other than allergies, she is doing very well, and I am so in love with her!

9.10.2010

Kindergarten!


September 1st was not only the first day back to school for us, it was the first day of Kindergarten! How ever did that happen? It was also that first day that Claire rode the bus home. I am so proud of my brave little girl, she loves riding the bus and is really enjoying her independence. I am really enjoying two less trips all of the way down to school. Claire has therapy the three other days, so for now, it is just twice a week home. Once we get the classroom situation settled in, I think she just might even ride the bus to school, so exciting! The classroom situation, there always has to be struggle to make a story good, right? At the start of the year, Claire was slated to be in the same preschool/kindergarten class that she was in last year. The problem with that is there were a bunch of rookies that got moved up into the class and it was chaos in there. Claire really does pretty well in chaos, but this was a little much. So I asked to see the k-3 class. I was able to see it that Friday and the same day get confirmation that she could switch! I seriously don't think we have ever had anything happen that easy. Wait a minute, maybe that was too easy, it got more complicated. We were told that today would be her first day in the new class, but it didn't quite happen like that. You forget just how unique your kid is when there needs to be a complete state of the union before moving to the classroom on the other side of the parking lot. I am actually really happy that both the old and new team are taking the time to be sure that no details get missed, Claire is really surrounded by a lot of amazing people. So hopefully next week she will be in the K-3 class as her new home, then we will start integrating her into her mainstream class. Eventually we will get all settled in and it will be Christmas break, oh well!

8.30.2010

Searching for Simple

Funny how as life goes on and I have more experience under my belt, my perspective keeps changing. I recently found a blog of a friend from Guatemala. When I was in high school I went with a group down to Antigua for a few weeks. Although that was 14 years ago, still, the memories continue to form me. I was in a group that went to play with the babies that were under weight and waiting for surgery. Short version is that the babies were really tiny because they had clef palette and couldn't have surgery to fix it until they were at least 12 pounds. There were so many babies, the nurses had time to go in circles and change diapers and feed the babies, but that was about it. It was explained to us that the babies would gain weight faster if they were played with. We would sing songs and roll balls, it really wasn't that hard, it was actually a lot of fun. I can honestly say I have such a deeper appreciation for what we did now than I did then. At the time, it didn't seem that important. In fact, the children were so perfect. Their spirits were free and they loved to laugh. Yes, they were all awaiting surgery, but they seemed so content. As a whole, the people in Guatemala seemed very peaceful and content. Sure they lived in houses made of mud with dirt floors, but they were so happy. I actually came back from that trip with a heart that was more broken for America than Guatemala. Sure we can flush our toilet paper and stop and get a can of soda just about anywhere, but on a whole, they are light years ahead of us, at least the area that I was in. On Sunday people would pack into very crowded rooms and stand for hours singing and rejoicing in the name of the Lord. Here we have tons of half full churches that cater to different groups, seems really sad. As I look at the pictures that Judy has put up of the school that she works at, it has stirred such emotion in me. I really struggle a lot with the mentality of advocating for stuff for Claire just because she is entitled to it, it is a very easy pit to fall into. We all compare notes, how much ABA therapy are you getting, who is mainstreamed with a 1:1 aide and how do you get all the equipment for the house. Seeing the pictures of a boy who waited years for a power chair were such a beautiful reminder of the great life that is here and available to Claire every day, regardless of "services". Sure I am going to fight the insurance company and the school, to make sure that Claire's needs are met and that she has access to education. But I will not let it consume me. There is so much perfect life inside her that I need to remember to take advantage of every day.